My MS story, ominous cloud rumble…

pic 1 searchI must be pickier than most because I doctor-hopped for a while, jumping from one to another, searching for a good neurologist. I have met many people with MS who said they are unhappy with their doctors, which absolutely confuses me.  I cannot comprehend why they do not merely leave the doctors with whom they are displeased.  If I am going to pay a doctor, he or she must have excellent bedside manners and be personable.  There is a relationship between you and your doctor, meaning he should not dictate things like a king.  The doctor I choose should list options, give the pros and cons of each, and then let me decide.  It is their medical degree, but it is my body, so my doctor should talk with me like a person.

I soon realized that my diagnosing doctor had terrible bedside manners.  On Thanksgiving week, I had an appointment with the doctor, and his cell phone rang during my appointment.  He picked up the phone and stepped out of the room for five minutes while I quietly waited.  He returned apologetically and explained that he had to set up some holiday dinner plans. That was unacceptable to me, so I left his practice never again to return after that appointment.

pic 2 listAfter I left my diagnosing doctor, my search to find a new neurologist continued.  After all, I would be spending a lot of time with him, relying on him to medically take care of me.  Finding a doctor is like finding a friend; there are many great people out there, but not all are friend worthy.  The doctor must take your insurance, and they must be close to where you live.  Accessibility is an often overlooked requirement, although it is more significant for those with physical challenges. I saw one doctor who had one step and a removable makeshift ramp that was too steep for wheelchairs and unsafe.

The next two year period was full of doctor appointments, MRI’s, and weird MS symptoms.  It took me a while to find a doctor that I was happy using, making this time frame extremely chaotic.  It was not easy finding an acceptable doctor, and learning how my MS would affect me made life miserable and did not make sense.  Life now was like trying to get directions from a person who does not speak English.  You will get there, but you will make some wrong turns along the way.  Of course, all of this caused me stress and stress, and MS are mortal enemies.  Stress causes more MS symptoms, creating more stress it was and is a vicious cycle.

pic 3 symptomsI was learning all about my new MS body every day as changes happened just that quickly.  I had these strange symptoms, and I did not know how to deal. For instance, I was extremely temperature-sensitive.  I had weird symptoms like extremely itchy hands that sent me to the ER.  Itchy hands sound silly, but it was much worse than you are thinking.   My walking had become extremely unstable and required me to stabilize myself using any solid surface.  However, I was too stubborn to get a walking aid, so I wobbled every time I walked, trying not to fall.  Pre MS it was easy to push myself when I hit a wall, but now pushing myself had devastatingly adverse outcomes.

last pic madI began to avoid everything because I did not want to be a burden on anyone.  Things were starting to go downhill, and my attitude was getting worse as I was very grumpy, and I had an extremely short temper.  A depression had begun to settle in, but I could not see it, and no one told me. I rarely saw my dad, yet my sister, who I saw even less often, said she did not like the person I had become but did not tell me why.  I saw my mom twice a month when she had me over for dinner.  I turned into a hermit and looked like one too.  I could feel myself slipping away, mentally, and emotionally, and it was not good.

Like the words from a horror movie, the worst was yet to come.

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